Developing primary care services for stroke survivors: learning from The Improving Primary Care After Stroke (IPCAS) research programme
As stroke survival improves, longer term care becomes increasingly important. But the long term needs of stroke survivors and their carers are not well addressed by current healthcare services. Stroke research and development has mostly focused on the earlier phases of a patient’s stroke journey and on specialist services and acute care. There is a strong case for enhancing the role of primary care, especially as time passes after the acute stroke event.
The Improving Primary Care After Stroke (IPCAS) research programme looked at the long term needs of people on primary care stroke registers and how primary care might address those needs.
This briefing provides key findings from the IPCAS research for healthcare commissioners and those working in stroke services and in primary care.
IPCAS was funded by the National Institute for Health and Care Research (NIHR). The research team was led by Professor Jonathan Mant at the Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge.
Finding: stroke survivors feel marginalised
What’s the problem? Patients and their carers often feel marginalised, experiencing what they describe as ‘premature’ withdrawal of services and a lack of follow up.
Once stroke survivors are discharged from specialist services and are back in the community, it is largely their own responsibility to seek care. Fatigue, mood and cognition difficulties are the most prevalent challenges reported, all of which affect their ability to negotiate access to healthcare services and adapt to life after a stroke.
Stroke survivors and caregivers also describe a lack of support with practical challenges such as rehousing and transport, and say that psychological and interpersonal difficulties seem to be outside the remit of healthcare services.
Caregivers feel unsupported and say that there is a lack of information about local services and about recovery.
What’s needed? Patients and carers wanted a single point of contact for stroke survivors and their carers, and for post-stroke services to be offered pro-actively.
The IPCAS patient-facing post-stroke checklist can be used to structure stroke reviews that identify and address stroke survivors’ needs. The checklist is short and a pragmatic and feasible approach to identify problems post-stroke and help with referral to appropriate support services.
Both health care professionals and patients supported use of the checklist. They felt that it would help structure a consultation, reduce variation, avoid problems being missed and facilitate awareness of issues that patients might be reluctant to raise. Healthcare professionals emphasised the importance of having a ‘clinical pathway’ to address identified needs.
See IPCAS Checklist
Finding: stroke survivors tend not to seek out help
What’s the problem? Services for stroke survivors in the community may be passive and unresponsive, and patients struggling with cognitive, physical and emotional burdens may not feel able to actively seek out services and negotiate access.
What’s needed? Pro-active service provision, including support for active self-management amongst patients, could help with the chronic consequences of stroke.
Self-management programmes for people with stroke have a role in improving quality of life in stroke survivors in the community. They can help, for example, with problem-solving, making lifestyle adjustments and finding resources and services. They are likely to be of greatest value if offered early after discharge from hospital.
Finding: stroke survivors’ needs change over time
What’s the problem? The needs of stroke survivors change over time. They typically experience different needs during different phases:
Stroke crisis: surprise at the lack of contact after discharge.
After discharge: psychological needs of anxiety and feeling of abandonment.
Longer term: physical and psycho-social needs in the context of multiple co-morbidities.
Over time, the healthcare needs of patients tend to be less dominated by their stroke, and more by factors associated with ageing and multi-morbidity.
What’s needed? Greater attention needs to be paid to services that can address the prevalent long term needs of stroke survivors, namely fatigue, low mood, and cognitive issues. There is a lack of evidence over what services are effective, but healthcare commissioners could support development and evaluation of innovative programmes to help.
Finding: poor communications between healthcare professionals hamper services
What’s the problem? Communication can be poor between health care professionals in different sectors. Longer term care for people with stroke should involve primary care, stroke services and non-stroke specialist services, but effective delivery requires improved co-ordination and communication between primary and secondary care.
Our research showed that the roles of the generalist and the specialist overlapped, but each tended to work in a silo. Primary care practitioners thought a lack of information from specialists hampered onward referrals, and didn’t always know which services they could refer patients to. Barriers to communication included different information technology systems and different language (e.g. use of abbreviations). There was a lack of knowledge amongst generalists in primary care about services to which they can refer and what are the role boundaries of such services.
What’s needed? Closer links between specialist services and community-based services. Established relationships, clear pathways for information and tools like dedicated phone numbers would help to improve contact between colleagues in different services and facilitate better support of stroke survivors. Improving connectivity through shared information systems is important.
Top priorities for future research
Research to inform who should be offered post-stroke assessment of needs in the community in the longer term (after six months)
Development and evaluation of interventions to address fatigue, low mood and cognitive problems of people with stroke in the community.
Aquino MR, Mullis R, Kreit E, Johnson V, Grant J, Lim L, Sutton S, Mant J. Improving Primary Care After Stroke (IPCAS) randomised controlled trial: protocol for a multidimensional process evaluation BMJ Open 2020; 10:e036879. http://bmjopen.bmj.com/cgi/content/full/bmjopen-2020-036879
Aquino MRJ, Mullis R, Moore C, Kreit E, Lim L, McKevitt C, Mackintosh B, Mant J. “It’s difficult, there’s no formula”: qualitative study of stroke related communication between primary and secondary healthcare professionals. International Journal of Integrated Care 2020; 20: 11:1-10. http://doi.org/10.5334/ijic.5465
Aziz NA, Pindus DM, Muillis R, Walter FM, Mant J. Understanding stroke survivors’ and informal carers’ experiences of and need for primary care and community health services – a systematic review of the qualitative literature: protocol. BMJ Open 2015. http://dx.doi.org/10.1136/bmjopen-2015-009244
Johnson V, Apps L, Carey ME, Kreit E, Mullis R, Hadjiconstantinou M, Mant J, Davies MJD on behalf of the MLAS Development Group. The development of a self-management interventions for stroke survivors – My Life After Stroke (MLAS). Disability and Rehabilitation, published on-line 3rd Feb 2022. https://www.tandfonline.com /doi/full/10.1080/09638288.2022.2029959
Johnson VL, Apps L, Kreit E, Mullis R, Mant J, Davies MJ on behalf of the MLAS development group. The feasibility of a self-management programme (My Life After Stroke; MLAS) for stroke survivors. Disability and Rehabilitation, published on-line 1st Feb 2022. https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2029960
Lim L, Mant J, Mullis R, Roland M. When is referral from primary care to specialist services appropriate for survivors of stroke? A modified RAND-appropriateness consensus study. Family Practice 2020; 21:66. https://doi.org/10.1186/s12875-020-01139-4
Mullis R, Aquino MRJ, Dawson SN, Johnson V, Jowett S, Kreit E, Mant J on behalf of the IPCAS investigator team. Improving Primary Care After Stroke (IPCAS) trial: protocol of a randomised controlled trial to evaluated a novel model of care for stroke survivors living in the community. BMJ Open 2019; 9:e030285. http://dx.doi.org/10.1136/bmjopen-2019-030285
Pindus DM, Lim L, Rundell AV, Hobbs V, Aziz NA, Mullis R, Mant J. Primary care interventions and current service innovations in modifying long term outcomes after stroke: a protocol for a scoping review. BMJ Open 2016; 6:e012840. http://dx.doi.org/10.1136/bmjopen-2016-012840
Pindus DM, Mullis R, Lim L, Wellwood I, Rundell AV, Aziz NAA, Mant J. Stroke survivors’ and informal caregivers’ experiences of primary care and community health services – a systematic review and meta-ethnography. PLOS ONE 2018. https://doi.org/10.1371/journal.pone.0192533
Scott Reid P, Neville E, Cater C, Mullis R, Mant J, Duschinsky R. Accounts of preventative coping: An interview study of stroke survivors on General Practice registers. BMJ Open 2022; 12:e058441. https://dx.doi.org/10.1136/bmjopen-2021-058441
Turner GM, Mullis R, Lim L, Kreit L, Mant J. Using a checklist to facilitate management of long-term care needs after stroke: insights from focus groups and a feasibility study. BMC Family Practice 2019; 20:2. https://doi.org/10.1186/s12875-018-0894-3
Blatchford RG, Aquino MRJ, Grant J, Johnson V, Mullis R, Lim L, Mant J. Patients’ experience of and participation in a stroke self-management programme, My Life After Stroke (MLAS): a multimethod study. BMJ Open 2022; 12:e062700. http://dx.doi.org/10.1136/bmjopen-2022-062700
Mullis R, Aquino MRJ, Kreit L, Johnson V, Grant J, Blatchford E, Pilling M, Fusco F, Mant J on behalf of the IPCAS investigators. Developing primary care services for stroke survivors: The Improving Primary Care After Stroke (IPCAS) research programme. NIHR Journals Library. In press.
Contact: Lucy Lloyd, Communications, Primary Care Unit, University of Cambridge
Image credit: Centre for Ageing Better Image Library Age-positive image library | Centre for Ageing Better (ageing-better.org.uk)